After sinus cancer treatment issues with sodium levels: What helps?

I was also diagnosed with polydipsia by an emergency room doctor. The thing is I don’t drink hardly any water. And a neurosurgeon said it’s I was misdiagnosed. When I try and drink water my sodium drops and I know I need to water. And I’ve tried to get in at the Mayo Clinic but was told that they couldn’t help because I had to many symptoms and they didn’t know what area to send my symptoms to. I’ve recently been told it sounds like siadh and that has been linked to neuroplastoma. My sinuses have been bothering me again but I’m not sure what to do. I feel like I have no one that wants to help me.

Hello, I'm so sorry for what you're going through. I don't know what you're suffering from. I understand you've already read this, but just in case, I'm letting you know. I've read that hyponatremia can be caused by hormonal problems, more specifically, those of the adrenal glands. Have you seen an endocrinologist? As I said before, perhaps you've read this before, and if you haven't, I hope it helps. My sincere hope that you find a solution or at least an answer to your questions. Best regards, Gustavo.
https://www.mayoclinic.org/es/diseases-conditions/hyponatremia/symptoms-causes/syc-20373711

Hello @deltadawn and welcome to Mayo Connect. I see that you have posted about sinus cancer in the NETs (neuroendocrine tumors support group). Did the biopsy indicate that your cancer is a NET? If not, I would encourage you to look at the following posts from other members who have had sinus cancer. Most of these posts are in the ENT (Ears, Nose and Throat) support groups.
Here is a link to many of those posts,
https://connect.mayoclinic.org/search/
If you post this question in one of these discussion groups, you will be able to find more support for your problem.

Just try putting a teaspoon and a half a day in your food. That work well with my wife who also had low sodium levels

Someone needs to find out why the sodium keeps dropping. Sodium should have
been back to normal after surgery. My sodium seemed fine for 17 1/2 months
after sinus cancer. Then my sodium dropped to 124 . And I feel worse than
ever.

@hopeful33250 yes my cancer was an NET. Old factory Neuroblastoma. And my sodium still drops if I drink even a regular bottle of water. I haven't felt good since I was misdiagnosed with polydipsia.

@deltadawn

Have you considered getting a second opinion? Here is a link to an article about second opinions: https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/tips-for-seeking-a-second-opinion/

I see from an earlier post, that you are not able to be seen at Mayo Clinic. You might consider another research-oriented health care facility, such as a university medical school.

Will you post again and let me know how you are doing?

@hopeful33250 Thank you for responding to my email. I have no idea where to start. I do know that whatever is happening, It’s getting worse. I keep retaining fluid(43 pounds heavier than I was) And about 5 days ago my ears started having this low ringing. The ringing lets up some when I drink liquid with electrolytes in it. Then as soon as I do I have to go to the bath room . Like something is telling my symptoms to eliminate the fluid. But abdominal area just keeps getting bigger. I do sit ups and rowing. Nothing seems to work. I’m beginning to feel like, I can’t stop what comes next. I can’t go to my nearest emergency room. One Dr ask me what kind of cancer I had and then laughed at me and said, you know how rare that is and this is just a small rural hospital. So I left. This is what I’ve been dealing with since my sodium level dropped to 124. I’m so fatigued everyday . And my face gets really cold when I’m really depleted. My neurosurgeon told me it’s probably something as rare as what you had and more than one thing . And that I need to find a young internist willing to help me.

@deltadawn

Might it be a good idea to have a consultation at a university medical school or another large medical center? Hard-to-diagnose disorders often cannot be treated in small community medical centers. They generally require travel to a larger city with more research-oriented medical facilities.

Have you considered asking your current physician for a referral to one of these medical facilities?

@deltadawn I second Teresa's advice for another opinion. You are your own best advocate for your health care. If you are not getting the answers that you need then keep looking. It does sound like you need to travel to a large medical center/referral center for more expertise in diagnosing your issues. I have been through this, and it is exhausting and discouraging to keep seeing doctors who do not help you. But if you keep after it, you will find the right one. Asking your local doctor for a referral is a good start. I was lucky enough to get a referral to Mayo Rochester 13 years ago and we drive 10 hours each way for every recheck. I don't think I would be alive if we hadn't done this. Keep trying.